Autism support services in Germany: Guide for Ukrainian refugees

Find­ing your way in Ger­many as a Ukrain­ian refugee is a par­tic­u­lar chal­lenge, but also offers con­sid­er­able oppor­tu­ni­ties for care. The Ger­man health­care sys­tem offers com­pre­hen­sive sup­port for autism spec­trum dis­or­ders, and Ukrain­ian refugees with tem­po­rary pro­tec­tion sta­tus can access these ser­vices through var­i­ous chan­nels.

Key findings

• Ukrain­ian refugees can access autism sup­port ser­vices through the Ger­man statu­to­ry health insur­ance sys­tem
• The diag­nos­tic process requires refer­rals from GPs to spe­cialised cen­tres
• Ear­ly inter­ven­tion ther­a­pies are cov­ered by health insur­ance, but can involve wait­ing times of sev­er­al months
• Chil­dren with autism have the right to inclu­sive edu­ca­tion and addi­tion­al sup­port in Ger­man schools
• Var­i­ous organ­i­sa­tions offer Ukrain­ian-lan­guage help to nav­i­gate the sys­tem

Healthcare rights for Ukrainian refugees

As a Ukrain­ian refugee in Ger­many, you are enti­tled to com­pre­hen­sive health­care. Since 1 June 2022, Ukrain­ian refugees have been receiv­ing ben­e­fits from the reg­u­lar social wel­fare sys­tem (cit­i­zen’s allowance/social assis­tance) and no longer the lim­it­ed ben­e­fits for asy­lum seek­ers.

This change sig­nif­i­cant­ly improves access to spe­cialised health­care ser­vices, includ­ing autism diag­no­sis and ther­a­py. With tem­po­rary pro­tec­tion sta­tus (§24 Res­i­dence Act), you can reg­is­ter with the statu­to­ry health insur­ance scheme (GKV) and receive an elec­tron­ic health card.

This insur­ance cov­ers nec­es­sary med­ical treat­ments, ther­a­pies and aids for autism if they are pre­scribed by a doc­tor. The insur­ance cov­er includes pro­fes­sion­al assess­ment, behav­iour­al ther­a­py, speech ther­a­py, occu­pa­tion­al ther­a­py and oth­er mea­sures rec­om­mend­ed for autism spec­trum dis­or­ders.

Understanding the German autism support system

In Ger­many, autism is served by a mul­ti­dis­ci­pli­nary sys­tem that includes health, edu­ca­tion and social ser­vices. Autism is recog­nised as a neu­ro­log­i­cal dis­or­der that requires spe­cif­ic ther­a­peu­tic inter­ven­tions and sup­port.

The Ger­man sys­tem dis­tin­guish­es between med­ical treat­ment (which is cov­ered by health insur­ance) and social inte­gra­tion ser­vices (which are pro­vid­ed by social ser­vices). This dis­tinc­tion some­times caus­es con­fu­sion, but both aspects are cru­cial for com­pre­hen­sive autism sup­port.

Some of the key terms you will come across include: Autism Spec­trum Dis­or­der, Ear­ly Inter­ven­tion, Inclu­sion Sup­port and Par­tic­i­pa­tion Plan. Under­stand­ing these terms will help you nav­i­gate the sup­port struc­tures in place.

Ger­man autism ser­vices gen­er­al­ly include a com­bi­na­tion of med­ical ther­a­pies, edu­ca­tion­al sup­port and social inte­gra­tion mea­sures. The aim is to pro­vide indi­vid­u­alised sup­port based on each per­son­’s spe­cif­ic needs and strengths.

Diagnostic procedure for autism

An autism diag­no­sis is made in Ger­many in a struc­tured way. The first step is a con­sul­ta­tion with the fam­i­ly doc­tor, who can issue a refer­ral to spe­cialised ser­vices.

For chil­dren, pae­di­a­tri­cians can refer to child and ado­les­cent psy­chi­a­trists or spe­cial­ist autism cen­tres. For adults, gen­er­al prac­ti­tion­ers refer to neu­rol­o­gists or psy­chi­a­trists with expe­ri­ence in the assess­ment of autism.

The diag­nos­tic process usu­al­ly involves the fol­low­ing steps:

• Com­pre­hen­sive devel­op­men­tal his­to­ry inter­view
• Stan­dard­ised assess­ment tools and ques­tion­naires
• Direct obser­va­tion of behav­iour and social inter­ac­tion
• Cog­ni­tive and lan­guage assess­ments
• Med­ical exam­i­na­tions to rule out oth­er ill­ness­es

Bring pre­vi­ous doc­u­men­ta­tion from Ukraine, if avail­able, even if it is not in Ger­man. The med­ical facil­i­ties can have impor­tant doc­u­ments trans­lat­ed, but this may take addi­tion­al time.

Educational support for children with autism

Chil­dren with autism have the right to edu­ca­tion with appro­pri­ate sup­port in Ger­many. The Ger­man edu­ca­tion sys­tem increas­ing­ly empha­sis­es inclu­sive edu­ca­tion and enables chil­dren with autism to attend main­stream schools with addi­tion­al sup­port.

In order to access edu­ca­tion­al sup­port, you need an autism diag­no­sis and often also an assess­ment of spe­cial edu­ca­tion­al needs. This assess­ment will deter­mine the type and lev­el of sup­port your child needs.

The options for edu­ca­tion­al sup­port include

• School escorts/integration assis­tants who pro­vide indi­vid­u­alised sup­port
• Mod­i­fied learn­ing mate­ri­als and assess­ment meth­ods
• Spe­cial edu­ca­tion teach­ers work­ing along­side reg­u­lar teach­ers
• Resource rooms for sen­so­ry breaks or con­cen­trat­ed work
• Indi­vid­u­alised sup­port plans tai­lored to your child’s needs (sup­port plan)

I rec­om­mend that you con­tact the edu­ca­tion author­i­ty or head­teacher of your school direct­ly to dis­cuss your child’s needs. Many schools have inclu­sion coor­di­na­tors who can sup­port you in draw­ing up suit­able sup­port plans.

Therapeutic interventions and medical support

Once a diag­no­sis has been made, peo­ple with autism can take advan­tage of var­i­ous ther­a­peu­tic inter­ven­tions. These ther­a­pies aim to pro­mote com­mu­ni­ca­tion, social skills and adapt­abil­i­ty while reduc­ing chal­leng­ing behav­iours.

Com­mon ther­a­pies that are cov­ered by Ger­man health insur­ance com­pa­nies include

• Applied Behav­iour Analy­sis (ABA) and struc­tured teach­ing meth­ods
• Speech ther­a­py (speech and lan­guage ther­a­py)
• Occu­pa­tion­al ther­a­py to pro­mote sen­so­ry inte­gra­tion and every­day skills
• Psy­chother­a­py with a focus on social skills and emo­tion reg­u­la­tion
• Train­ing pro­grammes for par­ents and car­ers

To take advan­tage of these ther­a­pies, you will need a doc­tor’s pre­scrip­tion stat­ing the type of ther­a­py, fre­quen­cy and dura­tion. The pre­scrip­tion should include the diag­no­sis code and a med­ical jus­ti­fi­ca­tion for the ther­a­py.

Med­ica­tion may be pre­scribed for co-occur­ring con­di­tions such as anx­i­ety, atten­tion deficit dis­or­der or sleep prob­lems. These med­ica­tions are cov­ered by health insur­ance if they are pre­scribed by a spe­cial­ist.

Practical steps for accessing support

Access­ing sup­port ser­vices for autis­tic peo­ple in Ger­many involves sev­er­al prac­ti­cal steps. I will out­line these steps to help you nav­i­gate the sys­tem effi­cient­ly.

First­ly, make sure you are prop­er­ly reg­is­tered and doc­u­ment­ed: valid iden­ti­ty card/passport, reg­is­tra­tion cer­tifi­cate and res­i­dence per­mit or fic­tion cer­tifi­cate with §24 endorse­ment. These doc­u­ments are essen­tial for reg­is­tra­tion in the health­care sys­tem.

You then reg­is­ter for health insur­ance at the social wel­fare office in your munic­i­pal­i­ty. You will then receive an elec­tron­ic health card, which will give you access to med­ical ser­vices. If you need suit­able hous­ing that meets autism-relat­ed needs, you should also apply for a hous­ing enti­tle­ment cer­tifi­cate.

Once you are insured, find a fam­i­ly doc­tor who can refer you to spe­cial­ists. Ask refugee sup­port organ­i­sa­tions or oth­er Ukrain­ian fam­i­lies for rec­om­men­da­tions for doc­tors who speak Ukrain­ian, Russ­ian or Eng­lish.

After you have received a diag­no­sis, work out a treat­ment plan togeth­er with the spe­cial­ists. Ask for writ­ten rec­om­men­da­tions that you can pass on to oth­er ser­vice providers such as schools or social ser­vices.

Social integration and support services

In addi­tion to med­ical and edu­ca­tion­al sup­port, social inte­gra­tion ser­vices offer addi­tion­al help for peo­ple with autism. These ser­vices aim to pro­mote par­tic­i­pa­tion in com­mu­ni­ty life and inde­pen­dence.

Social inte­gra­tion ser­vices (inclu­sion sup­port) can include the fol­low­ing:

• Sup­port with cop­ing with every­day life and house­hold man­age­ment
• Sup­port with leisure activ­i­ties and par­tic­i­pa­tion in social life
• Sup­port with voca­tion­al train­ing and employ­ment
• Forms of hous­ing, rang­ing from inde­pen­dent liv­ing with sup­port to spe­cialised res­i­den­tial groups
• Fam­i­ly sup­port ser­vices that offer respite care

To make use of these ser­vices, you must sub­mit an appli­ca­tion to your local social wel­fare office. They will deter­mine your needs and draw up a par­tic­i­pa­tion plan. This plan describes the spe­cif­ic sup­port ser­vices that the per­son with autism will receive.

The appli­ca­tion process usu­al­ly involves sub­mit­ting the autism diag­no­sis, a detailed assess­ment of sup­port needs and some­times a socio-med­ical report. The social work­ers of the refugee sup­port organ­i­sa­tions can help with this appli­ca­tion process.

Alternative support options

Dur­ing the wait­ing peri­od for offi­cial ben­e­fits, which can take sev­er­al months, var­i­ous organ­i­sa­tions offer imme­di­ate assis­tance. These resources can pro­vide valu­able tran­si­tion­al sup­port and con­nec­tion to the com­mu­ni­ty.

Nation­al autism organ­i­sa­tions such as Autismus Deutsch­land e.V. have region­al branch­es through­out Ger­many that pro­vide infor­ma­tion, par­ent groups and some­times direct ser­vices. Many have devel­oped spe­cial pro­grammes for refugee fam­i­lies.

Par­ent-led sup­port groups offer emo­tion­al sup­port and prac­ti­cal advice based on per­son­al expe­ri­ence. Some groups specif­i­cal­ly tar­get mul­ti­lin­gual fam­i­lies or have Ukraini­an/Russ­ian-speak­ing mem­bers.

Wel­fare organ­i­sa­tions such as Car­i­tas, Diakonie and the Ger­man Red Cross (DRK) offer var­i­ous sup­port ser­vices for refugees with dis­abil­i­ties. They can often pro­vide prac­ti­cal help, donat­ed aids and guid­ance through the sys­tem.

Online resources such as Hand­book Ger­many (handbookgermany.de) pro­vide infor­ma­tion in Ukrain­ian on access to health­care and sup­port for peo­ple with dis­abil­i­ties. The web­site “Germany4Ukraine” also offers valu­able infor­ma­tion in Ukrain­ian and Russ­ian.

Overcoming language and cultural barriers

Lan­guage bar­ri­ers can be a major chal­lenge when access­ing autism ser­vices. How­ev­er, there are sev­er­al resources avail­able to over­come these bar­ri­ers.

Trans­la­tion assis­tance is avail­able from social ser­vices, inte­gra­tion cen­tres and vol­un­tary organ­i­sa­tions. For med­ical appoint­ments, you have the right to request a pro­fes­sion­al inter­preter, although avail­abil­i­ty varies by loca­tion.

Many doc­u­ments on autism sup­port are avail­able in Ukrain­ian or Russ­ian through organ­i­sa­tions such as the Fed­er­al Gov­ern­ment Com­mis­sion­er for Migra­tion, Refugees and Inte­gra­tion. Look for resources cre­at­ed specif­i­cal­ly for Ukrain­ian refugees.

Cul­tur­al dif­fer­ences in the under­stand­ing of autism and dis­abil­i­ty can also be a chal­lenge. Ger­man approach­es to autism focus heav­i­ly on evi­dence-based inter­ven­tions and inclu­sion, which may dif­fer from approach­es in Ukraine.

I rec­om­mend liais­ing with Ukrain­ian com­mu­ni­ties in Ger­many who have already nav­i­gat­ed these sys­tems. Their first-hand expe­ri­ence can pro­vide valu­able insights and prac­ti­cal advice tai­lored to your cul­tur­al con­text.

Financial support and assistance

Fam­i­lies sup­port­ing a per­son with autism may be enti­tled to addi­tion­al finan­cial sup­port. Under­stand­ing these ben­e­fits can help ease the finan­cial pres­sure while access­ing the ser­vices they need.

Peo­ple with severe dis­abil­i­ties can apply for a severe dis­abil­i­ty card, which offers var­i­ous ben­e­fits includ­ing tax reduc­tions, trans­port dis­counts and employ­ment pro­tec­tion. The appli­ca­tion is made via the local ben­e­fits office.

For chil­dren with autism, addi­tion­al child ben­e­fit can be paid over and above the nor­mal age lim­it. Care allowance can also be grant­ed if there is evi­dence of a sig­nif­i­cant need for care.

Adults with autism who are unable to work due to their con­di­tion may be enti­tled to dis­abil­i­ty ben­e­fits. The amount of ben­e­fits depends on var­i­ous fac­tors, includ­ing employ­ment his­to­ry and the sever­i­ty of the dis­abil­i­ty.

Do not hes­i­tate to ask the social work­ers in the refugee sup­port cen­tres about these finan­cial aids. They can help you under­stand what you are enti­tled to and assist you with the appli­ca­tion process.

Plan for long-term support

Once imme­di­ate needs have been met, it is impor­tant to plan for long-term sup­port. This includes build­ing a net­work of ser­vices that will pro­vide ongo­ing sup­port as your needs change.

Reg­u­lar reassess­ment of needs is cru­cial, espe­cial­ly for chil­dren who are grow­ing and devel­op­ing. Ser­vices should be adapt­ed to chang­ing cir­cum­stances and devel­op­men­tal progress.

For chil­dren approach­ing adult­hood, tran­si­tion plan­ning should begin ear­ly. The Ger­man sys­tem pro­vides var­i­ous sup­ports for adults with autism, includ­ing voca­tion­al train­ing, sup­port­ed employ­ment and inde­pen­dent liv­ing sup­port.

Con­sid­er appoint­ing a legal guardian or rep­re­sen­ta­tive for adults with autism who need sup­port in mak­ing deci­sions. This legal guardian ensures that their inter­ests are rep­re­sent­ed in health, finan­cial and hous­ing deci­sions.

Doc­u­ment your expe­ri­ence with the sys­tem to help oth­ers in sim­i­lar sit­u­a­tions. Many organ­i­sa­tions that sup­port refugees wel­come feed­back to improve their ser­vices for fam­i­lies with autism.

Sources

Fed­er­al Min­istry of Labour and Social Affairs — FAQ for Ukrain­ian refugees

Fed­er­al Min­istry of Health — Guide for refugees

Germany4Ukraine — Infor­ma­tion por­tal on health care

Fed­er­al Gov­ern­ment Com­mis­sion­er for Migra­tion, Refugees and Inte­gra­tion

EU Equal Treat­ment Cen­tre — Health­care in Ger­many

Hand­book Ger­many — Infor­ma­tion on med­ical care for Ukraini­ans